Yesterday I felt the need to speak up in my neighbourhood’s Facebook group on a picture that someone posted of a car parked in a no parking zone with an accessible permit. It really upsets me to see this sort of public shaming, and I’ve seen it before on this group, so this time I felt I needed to get involved. I really tried to make people see reasons why someone may need to park there, but most of them
didn’t seem to want to hear the other side of it. A lot of people are quick to assume that those who use these permits are often “taking advantage” of having one. I just want to assure everyone that it’s not a fun perk to have to use one of these permits. I can’t say I’ve ever met someone excited to need it. Sometimes people need to park as close as possible to the location they are going, that is the point of the permits. That is why it’s legal to park in a no parking zone in Toronto with one. I understand there have been instances where people are using someone else’s permit, or no longer need theirs and choose to use it anyways, which I agree is wrong, but we cant just decide that that is the case all the time!
It really upsets me to feel like I need to constantly stand up for myself and other people using accessible parking permits for a very valid reason. I mentioned in my comment that this is a group of people who are constantly having to convince people of the validity of their disability. Especially if they aren’t using a wheelchair, or other mobility aid. It’s easy to look at someone and judge them, and think you know what’s going on in their life, but you don’t. I’ve had times where I felt that we’ve parked close enough and I’d able to go into the store quickly without my cane for example, but I know I’ll be getting dirty looks and judgment from people who have no right to judge me, so I bring my cane anyways.
I guess this post is just me venting, I want people to understand that there is a large spectrum of disabilities, some of which are invisible and all of which are valid.
Let’s not just assume someone is abusing the system that was put in place to help them.
I’m feeling a bit mad at the universe today. It’s starting to feel like it has it out for me!
I’ve just sort of been dealing with a lot of crap these days. The usual MS stuff, this weird foggy/dazed feeling head that I’ve had forever, as well as a really messed up back which has left me in a bunch of pain most of the time. I’ve been trying my best to do as much as I can still, and today I felt like I would be somewhat productive and get myself to the pharmacy to pick up a prescription, get some lunch, things like that. I was thinking I was doing pretty well in spite of already feeling sore, just walking along on the side walk, taking in the (sometimes strange) sites of downtown Toronto, when a guy on his bike slammed into me out of no where. Well he was coming from somewhere, but I definitely didn’t notice until I heard him starting to yell, moments before he hit me. He smashed into me, ran over my foot and knocked me to the ground. I immediately started to cry as it was already painful, falling on my butt/tailbone that has already been bothering me for weeks now. So there I was, on the ground, and the first thing I thought about was how I wished I had my foldable cane out (it was in my bag) to hit him back with! A couple of girls who were near by came to my side and started asking if I needed an ambulance, which I did not, and a man helped me to my feet, which I was struggling to do on my own. It all happened really fast, and I was in shock. I went to sit on a near by stoop and the guy who hit me apologized and continued on, into the near by building after I said through tears that I was okay, and told him off for being on the sidewalk (which is not allowed in Toronto!). I didn’t know what else to do. The guy who helped me up said I should have called the police, and had him arrested, or try to sue him or something, but to be honest, he looked like life had not been kind to him, missing teeth, dirty clothes, heading into the financial aid office, and I just didn’t see a point. Nothing was broken, I was just shaken up and really sore, everywhere, from the whole ordeal, and wanted to go home. Once I got home, the extent of how much pain I was in started to set in, and now I think that I will be doing a lot more laying down on heating pads the next couple of days.
Now I know saying the universe has it out for me sounds a bit dramatic, I know that sometimes shit happens to everyone. It’s just in time like these I just want to yell at the world and say how it’s not fair to keep piling on! It would be nice to be cut a little slack.
Let just be honest, MS fatigue is a real bitch sometimes. I think It’s one of those things that most people don’t really understand about MS, or know it can be a part of it really. I’ve been dealing with this lately and I just think it’s something I want to talk about.
For the past week or so I’ve felt really out of it. I mean I always have a really foggy feeling in my head, but I’ve been beyond exhausted, which is something new for me. It feels like I haven’t slept in a week! It’s a bit hard to explain, because it’s different then just feeling tired, it’s like a full body as well as a mental fatigue. I’m a bit like a dizzy zombie bumbling around these days (again, great practice for my future “Walking Dead” fame and fortune!). It’s also TIFF right now, which is actually the main thing I’ve been leaving the house for, because I’m stubborn and don’t want to miss any screenings I have tickets for!
The fatigue kind of varies throughout the day in intensity for me, and some days are worse than others. Like today is particularly bad, I don’t know how I’m going to make it to the screening I have later, but I want to, so this is where that stubbornness kicks in! I’ve been really excited for this movie for a while now (what we do in the shadows, look it up!) so I’m gonna go anyways. I never know when the actor/directors are going to be at the screenings, but I’m hoping Jemaine Clement will be there today so I can convince him of our meant to be best-friendship. He’s obviously missing out. I’m a great time..when I can stay awake :D
After that, I think I will spend about a week sleeping.
Update: Met Jemaine. Great movie. Worth it.
So the Toronto International Film Festival is fast approaching and I’m getting excited! I love going to TIFF, it’s one of my favourite times of the year! Toronto comes alive and you can just feel the excitement in the air. Tons of people come for it, and the city goes a bit crazy. They bring films from all over the world, and this year there are almost 400 films being screened, from 70+ countries! Its a film nerd’s dream come true, right at my doorstep!
Usually I get a package of tickets to share with my brother, this year we have 5 each, and today I got to select which films we would see. They randomly select a window of time you are able to log in and choose, and this year I had pretty good luck as most of what I wanted to see was still available! This doesn’t always happen. I remember last year cursing at the screen as the words “off sale” blinked at me, over and over, mocking me! This year I was prepared. I’m talking about spreadsheets, and multiple options for each day, I was ready to go. Let just say I have a lot of free time right now, so I really committed. ;)
The only thing I’m a bit worried about is getting around. As I mentioned there are a ton of people, just everywhere you look. I also have a feeling I will be taking a lot of cabs. But it’s worth it! They do at least have what they call a “lobby pass”, which allows anyone with mobility issues to sit in a designated waiting area before each screening instead of waiting in line. I had this last year, and it was a really good thing that I did because TIFF is full of eager beavers who show up hours before the screenings to wait in line. Me + standing in line for hours? Don’t think so! It was really easy to get this pass last year, they didn’t really ask me for any details and just gave me one. I guess that was taken advantage of though, because this year I apparently have to prove my need for it. I’m assuming this is because some people were abusing it, and If that’s the case I totally understand them having to put some stricter rules on obtaining a pass… but it still feels pretty awkward to have to prove that I am “disabled enough” to need it. Especially in my case, where I don’t actually have any written proof of my issues. I guess I will be calling my doctor for a note?
Anyways, I wont let that all put a damper on it for me, I’m really looking forward to it, and I’m sure it will all work out. Got some really great films lined up to see, and I’m looking forward to all the uniquely TIFF things (like everyone yelling ARR when the anti pirating ad comes up!) that are in store. Gotta love festival time in Toronto!
So I have decided it’s time to focus on the positives. I think I’ve been a bit caught up in all of the negativity of everything latley, and it’s time to get over that now. You can just decide that, right? Well I’m going to.
Earlier today I was feeling pretty overwhelmed. Tying to get around big crowds in the city with the good ol’ leg issues and a my trusty walker can be..interesting. But I’ve now decided that instead of focusing on how hard it was to do what sounds like it should be simple, I’m going to focus on the fact that I did it. Maybe I have to take a lot of taxi’s and breaks to do things these days, but I did it!
Yeah, today was a bit of bad day, but tomorrow is a new one. Tomorrow I’m going to focus on the positive. I’m going to look into finding a new place in a different neighbourhood. I think earlier was thinking of it as something I should do, after my experience with the crowds today, but really I’ve been talking about moving for a while now. While it’s busy everywhere in the city, maybe getting away from the crazy mega mall would be just what I need!
Basically, I’m deciding that it’s time to get out of this funk. I think the whole MS thing can feel a bit all-encompassing sometimes. Especially right now when I’m still recovering from a flare, and having a lot of issues in general surrounding my health. I think because of that I need to make a bit more of an effort to see past it all. I was at a funeral yesterday, and Its never more apparent how short life really is than when someone passes away. It’s a wake up call to everyone, and you start to reflect on life in general. For me, it’s reminded me how much there is that I still want to do in mine. It’s time to start living, I just need to figure out where to begin.
I think I’m slowly getting a bit better! Well my legs are at least. Still get really dizzy and stuff like that, and the headaches are a bit much lately. But today I walked to get lunch at a pita place that I’ve gone to once before with the walker I’ve been using for a bit of extra help right now, and had to take a break half way, but today I made it there without a break! It’s not very far, but for me it felt like an eternity just a couple of weeks ago. It feels good! Well, I mean I my legs don’t feel so good but I’m happy I was able to do it! I also found $5 on the ground on my way home, which was awesome. It was almost like some kind of cosmic reward for making it. Or at least I’m going to tell myself it is, so thanks a bunch, universe. Ha!
I had a couple visitors yesterday, which was nice. I also hung out with my new MS friend on Friday and we went out for dinner near by and it was really nice! She’s been a big help in all of this for me, a great person to talk to about it all. And we have a lot in common so I’m really glad we met!
So again, I remind myself to take it one day at a time, and stay hopeful that things will continue to get better. But for now, I must lay on the couch with my crazy cat watching really bad wedding shows on TLC. I don’t know why, but it’s happening.
Hello again, blog world!
So I thought I’d share a little update on the MS front. I think my legs are a bit better, feeling just a little stronger, which is great! They are still really heavy and sore but I’ve been trying to walk a bit further then I have been with the walker, trying to push it a little bit. It’s just a fine line between pushing it a bit, and pushing it too far, which is difficult to figure out. I sure am trying though! Have a physio guy coming tomorrow so that’s good.
I’m still pretty sick of my apartment, and the tiny area around my apartment that I can venture out to on my own. One can only go to Starbucks so many times without starting to hate Starbucks… Oh who am I kidding, I love Starbucks. I think I’ll go there later actually. Haha!
I haven’t really had any visitors this week. Unless you count my cat, which most people don’t, which I think is just catist. Yeah I just made that up. I did try reaching out to some people and invited them to come by visit me! Had a couple different people say they want to but that’s about it. Oh well, it’s fine, I’ve been distracting myself with lots of Netflix. Im on a new show (Rectify, it’s really good!) and I’ve been trying to get out for a little bit most days. So if people feels like showing up, I’ll be here, and if not, I’ll be fine on my own, with said cat. I’m not so bad to hang out with at least!
I’ve also gotten back to my role of “Welcomer” on the forum I frequent for people with MS (www.shift.ms, check it out!) I just message new members welcoming them to the site, which is fun! Gives me something to do. Even if I do have to take breaks some times because the computer still makes me feel all dizzy and crazy if I’m on it for too long (kinda like I’m drunk, without the fun parts). I’m also trying to get more involved with the group I’m in through the MS Society, so at least I have a couple things going on! Hoping to start doing more slowly.
So that’s where I’m at these days. Nothing very exciting! Hope anyone who reads this is doing well. Whoever you are!
Here’s the thing, I understand the curiosity, or even confusion, seeing someone young with a walker. Most people don’t know about MS. Even some friends of mine still have no idea what it means that I have it. It’s frustrating, but that’s just how it is.
I mentioned in my last post that I’m still having a bit of a tough time with my current relapse. I’ve been trying to get out and walk more using the new fancy walker I have (basket and all!) and just ignore the funny looks I get. People in the city are not shy about openly staring, apparently! I just smile back at them (I may or may not sometimes be secretly giving them the finger in my head.. Lol!), but I think I’d rather people just ask me. I’ll tell you! I have MS, and I need the help to walk right now while I’m trying to recover. That’s life, so take your judgey looks, and… google it. Okay that’s not what I actually wanted to say ;)
I’m still trying my best to stay positive. I have a physiotherapist coming to my apartment sometime this week, and they are going to teach me some home exercises and stuff like that. So that’s good! Maybe it’ll at least help me feel like I’m doing something instead of just sitting and worrying about everything.
Haven’t heard too much from the Toronto friends lately. I think people just get wrapped up in their own lives and forget about others sometimes. I get it, everyone has their own stuff going on, life is busy, but it’s still a bit disappointing! It does make me appreciate the ones that do try to keep in touch that much more though. So that’s good!
Today is my dad’s birthday and we are going out for dinner, which is nice! I’ve been extra dizzy the past couple days so I’m definitely bringing my walker to hold onto, and a smile for anyone who wants to stare at me for it. :D
Still stuck at home. And bored! Bored of feeling sick, and sore, and tired. Bored of staying home and not seeing people! I’ve been at my apartment and had my mom visiting this weekend, which was nice, and helpful, I just wonder when I’m going to get back to normal life! Where I can do things! Like you know, go out and see people, have fun, and feel 26 years old?
I actually went out with the walker I got to help me out right now for the first time by myself today, just did a little walk around my building to get the blood flowing. Haven’t done much this weekend since I’ve also been pretty sick with a cold or something as well, which has made things more difficult. Being sick sort of exacerbates my symptoms too. I just want to try and push myself to walk a bit more every day to get things moving again. I try not to worry that things aren’t going to get better, but the worry has been creeping in a little these days. It’s hard not to let it. It’s a real jerk, that worry thing.
I know I need to find some patience, and give myself time to recover. I think starting some kind of physio will teach me what to do to work on it, but there’s that good old impatient Melissa peeking through these days sometimes.
She will have to chill out.
Like this lazy cat. Who is turning out to be a disappointing roommate, as she hasn’t even tried to help with the dishes or anything in my time of need. ;)
Been a bit MIA from the blog these days, haven’t been doing so hot. This relapse is kicking my ass a little right now to be honest. That, the steroid side effects, and now a cold are all adding up to me feeling pretty awful! Not to mention the fatigue, and chronic pain I have… Pretty much everywhere. But you know what? It could always be worse. I mean sometimes you’ve just gotta complain a bit, because it does suck, but I try to remind myself that there’s always someone out there having a harder time than I.
I’ve been staying at my dad’s place this week, letting him take care of me a bit!Its nice to have the help, and the company, of course! He and my step mom have been great. I would usually rather stay home at my own place, but when I’m feeling this rough, I seem to prefer to have people around. It can get pretty lonely, especially when you’re not up to leaving the house. I am starting to feel a bit homesick now though, so will probably head back home soon.
Not much to update on really. Just trying to deal with it one day at a time and not worry too much about what will come of everything. Still hoping I’m able to recover, at least mostly, from this one, and plan on getting into physio/rehab ASAP to help things along. Looking into buying a walker to help me get around in the mean time, which feels a bit intimidating to think about needing, but I think it would help get me out of the house easier when I’m up to it, and that sounds good to me! I’m not looking forward to the inevitable weird looks I’ll be getting, but that’s on those people, not me. So I need a little help right now, deal with it, suckas! Talking to my new friend who has MS (the one I’ve mentioned before, great girl!) has made me a bit less freaked out by it. She just made its seem so normal and not a big deal, and that helps. I don’t think it will be a forever thing, but whatever helps me get through right now seems to just make sense, amiright?!
That’s all for now!